Eosinophilic Esophagitis (EoE): Our Journey of Hope [Part 1]

The beginning days of parenting our daughter Audra were filled with all the delight of most first time parents. Audra’s first week home, we would tiptoe into her nursery and just stare at her tiny form. We were in complete awe of our little miracle and so full of thanks and amazement as we watched her grow and change. The way she saw the world and took in every moment showed us glimpses of her personality. Each milestone, from rolling over and sitting up to crawling, walking, and first words, was filled with fresh excitement. Oh, what a fun first year.

Shortly after her first birthday, though, Audra had a scary choking episode that we shrugged off as a fluke (she was eating baby goldfish, after all). Within a week of that episode, however, she began running a fever and gagging/vomiting at meals. Little did we know that we were entering a 7 month long season of no answers for these symptoms. Our new normal became 1-2 doctors visits a week, Audra gagging and vomiting with almost every meal (despite being moved to a diet of mostly purees), weight loss, and medical tests and procedures.

During this time we felt confused about what was going on and helpless that we couldn’t fix these episodes. It was hard to go through the days of no answers. I’ll never forget the time when Audra and I had gone on a trip to the west coast to visit family. She had been experiencing a short respite from symptoms, but upon our arrival, they came back with a vengeance. My mommy heart was perpetually on edge about food because I never knew what was going to set off one of her vomiting episodes. After she had an especially painful and difficult episode while we were there, I was able to get her cleaned up and settled in bed for a nap. As soon as I closed the door to her room, I melted into tears and sobs. My sister-in-law caught me and cried with me. I felt so scared and alone and yet so loved and supported. That would become the theme for this journey.

Our days became marked by:

Breathing out confusion. Why can’t we get an answer to what is going on with our little one more easily?

Breathing in assurance. God had given us our daughter, and we know His plans for her are for good.

Breathing out anger. How can a doctor shrug this off as a stomach bug?

Breathing in peace. Prayers and support of friends and family brought us peace and community when we needed it most.

Breathing out heartbreak. When the nurses took our little one from our arms for a procedure or, almost worse, having to help hold her down and look into her scared eyes as they performed a difficult test.

Breathing in comfort. We bathed ourselves and Audra in Scripture, and our souls were truly washed with the water of the Word. His promises comforted us and were balm to our tired hearts.

Breathing out fear. Watching Audra lose most of her meals.

Breathing in His promises. Trusting in His goodness.

During this 7 month phase, we didn’t know that Audra had a condition called Eosinophilic Esophagitis (EoE). Stay tuned for the next part of our story.Click here to continue to part 2 of our journey with Eosinophilic Esophagitis >>